Jodi Enders and Jason Gray share how openness, compromise, and honest communication have helped them build a strong relationship while navigating life with myasthenia gravis. Read Enders’ column, Obstacles Can Excite Creativity.
Transcript
Jodi: Hey, I’m Jodi. I am the moderator and social manager for the Myasthenia Gravis community. And I have MG. I’ve had MG for five years, and me and Jason met four years ago. We live in Florida, and we met fossil hunting.
Actually, that’s our main hobby that we love to do. And that’s kind of been just how our relationship has evolved, has been going on dates that spark our interest, and that helped us feel connected as a couple. And so a lot of our dates revolve around being outdoors and enjoying nature.
Jason: And I’m Jason, obviously, I’m her boyfriend, and I have enjoyed every moment of it. There were a few things that kind of caught me off guard when I first met her. She was like, “Yo, I have a rare disease.” I was like, “What do you could it be?” I was like, “Obviously I went straight to like, what could it be? Is it something she’s going to contract in me? Like, am I going to?” I had no idea what it was.
And then she’s like, “No, it’s just MG.” So I did a bunch of research on my own, found out what it meant to have MG, what a lifestyle with MG would look like, possibly in the future or the present.
And we kind of just worked to make everything in life more manageable for her, so I’m not, like, pushing her past her limits and stuff.
Jodi: We are very open in communication. I think that’s very important with life in general, especially if you have a chronic illness.We’re finding joy, finding things in life, even if it’s going on a walk together in the day, things to balance. For us right now, when I’m in remission, that’s, “Oh, let’s go outside into nature.”
But we are realistic that there could be times in our lives that that’s going to be challenging to, to fully be able to align with what we ideally would like to be doing. You just gotta always be evolving and adjusting and finding ways to bring what you love into your day to day.
You know, it’s some days, you know, if I’m feeling great, that could be that we’re able to go paddle. But other times it’s, you know, unfortunately, the current where I just know my MG symptoms, I’m not going to be back if we go and paddle, you know, so sometimes or compromise. He sometimes wants to go. He’s a big fossil hunter, and we want to go out on an adventure walk for hours. And sometimes I’m just realistic that that sounds great.
I might be able to get a certain way, and then I’m going to be stuck, and then I’m going to have to be rescued. And you don’t want to end up in situations like that. So sometimes there’s the unfortunate compromising of the situation probably wouldn’t have ended up like that. Maybe. But even if there’s a 10% chance for the situation you can end up in, it’s bad, you can’t take those risks.
So in a relationship where we do a lot of adventuring and stuff outdoors and a lot of things that involve triggers for my MG, there’s been a lot of compromising, but that’s always a good teacher for the future. There’s a billion things in life that we cannot plan for and that could happen.
So I think the MG, even though it’s not super forefront, it’s allowed us to look at a lot of just different things and talk about, have harder discussions, look at.
It’s opened up different doors of our relationships and aspects as far as that are applicable to other areas of life, and to be able to really understand each other and to know when it’s those difficult periods of life, how you can still help that person find joy and balance and to be able to help that person just get through the day.
So the advice I have for the MG community and other MG patients that are in the dating phase of their life is you don’t have to, and you also don’t want to feel like you have to present this perfect version of yourself or this fake version of yourself.
Presenting your truest version upfront makes it where, you know, there’s no miscommunication, there’s no hidden things being revealed down the road that are going to create questions. Or just like you want a partner to be fully there with you with MG.
